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How I've Changed
You feel like a stronger person. You don’t worry. You don’t sweat the small things in life. There are other things to worry about, not the little things. -Father I don’t really feel that I was a bad person, but it makes me more conscious of wanting to do the way God would want people to do. -Mother I think things through more, and I know he’s in heaven. And I guess I’m more conscious to make sure that I don’t do anything where I won’t get there too. -Mother What I learned now, with anything in life, is that it doesn’t matter if it’s a good thing or a bad thing, you have two choices; you can lie down and give up, or you can fight it. I don’t think I ever really understood that until I watched him live his life. -Mother Paulina taught us never to give up. She taught us to be optimistic in the face of all odds, and the true meaning of love and devotion. -Mother Before, I was never a very outward person, I was quite shy. Now, if I can do anything to help anybody in any way, I’m there and I don’t really give a damn about how I look or sound or what people think any more. -Mother You abstain from the ostentatious; you do because it’s just so unimportant at the end of the day. An example would be to only take what you yourself can use. Don’t take too much. It’s not all about money and possessions; you know greed, about having all kinds of things for yourself or for your family, a big house or whatever. It has made me stop and think before I say “Oh, I wish I could have a $20,000 ring.” I don’t say I don’t want anything at all, but I could be happy with something a whole lot less and make a donation to Camp Mak-A-Dream or to another organization. I’m more conscious about sharing with people who might need what I can give. -Mother I have found that I have lost a lot of friends. I have gained many friends as well. It’s really strange. You sometimes get support from where you least would have expected it and get disappointed where you have had an expectation. -Mother I’m a different person because of her. I definitely think that her life helped to bring us closer to God and has shown us things that I don’t know that we would have seen otherwise. I think she has encouraged us through her life to do things for others. We do a lot of things on holidays and for her birthday and just things in general because of her. I know we wouldn’t do it if it wasn’t for her. I know that she has made differences in people’s lives through bringing toys here for children on her birthday. We’ve done some things in regards to bereavement that I know have touched people’s lives. I know it’s only because of her. -Mother The grieving process has been difficult but eye opening and important as well. My husband and I weren’t religious people at all, and I think that if we had any inkling of it, we completely rejected it after our son was born, sort of “Why me? Why us? How could a God actually do this?” I think that our time with him, and our therapist, whom I would really credit with this, allowed us to find a level of spirituality that we now have that we didn’t have before, organized religion and we wouldn’t have if we didn’t have him, and if we didn’t have our therapist. I think we could have gone through having him, and without our therapist, we wouldn’t have seen a lot of things that she opened our eyes to. -Mother My daughter is a little kick in the pants for me. I’ll have the typically daily moments when you could become extraordinarily irritated at a salesperson or someone on the phone, but most of the time I feel like I’m inspired to take a deep breath and re-evaluate my desire to scream at this person. Most of the time, I succeed in holding myself back from being obnoxious. Most importantly, she has inspired me to be a compassionate and forgiving person. A whole new world opens to you when you have a sick child and you realize suddenly that most people, most of the strangers in the subway, in the restaurant, in the movie theater, on the sidewalk, have a story and have personal pain that you can’t see. It was a whole new world, a parallel universe opening up to me. Everybody here has some personal pain. Some of it may be as large as the death of a loved one, or the profound life-threatening sickness of their child. That alone is reason enough to give everyone the benefit of the doubt. It’s given me a much better sense of nuance and has added facets onto people for me. -Mother Enlightenment and Personal Development Since Paulina’s passing, I promised Paulina that I would embark on a path of enlightenment and personal development and that I would go out and make a positive difference in people’s lives. I had a solid career in marketing and advertising before for fifteen years, and that’s something that I cannot bring myself to do now. So, I’m gradually retraining towards being a psychologist. So, I mean I’m starting out, and I’ve got a long way to go, and I’m taking it very, very slowly. I really have just this amazing amount of love to give and I guess just this need to be serviceful. Before, I was never a very outward person, I was quite shy. Now, I’m like if can do anything to help anybody in any way, I’m there and I don’t really give a damn about how I look or sound or what people think any more. And from that perspective, Paulina has shown me what is important in life, and it really is just very pure, and it doesn’t involve anything material. -Mother I personally have not had the energy to try to educate people in how to converse with me. I’m like “There are books on that.” I have found that I have lost a lot of friends. I have gained many friends as well. It’s really strange. You sometimes get support from where you least would have expected it and get disappointed where you have had an expectation. That, to me, was a crippling loss on top of all that we had experienced with Paulina because you can’t talk about the weather. Life changes, you’re perspective changes. I guess from that point of view, just be who you need to be. And don’t try to pretend. -Mother I think that this experience has shaped who I am as an individual completely. The good things there would be opening my eyes to things that need to be changed within our healthcare system, being an advocate and a voice for other families to have a good experience in pediatric palliative care, and having the opportunity to love an individual in that way was so unbelievably meaningful. -Mother As far as my life goals, I don’t think my child’s death changed them. It’s made me want to do them sooner. The reality that life is not a constant and is something that is taken for granted, so as far as what my goals were, they didn’t change but as far as doing them sooner we want to do everything now. -Mother As far as spiritual beliefs, it kind of shook my beliefs in what is good and what is supposed to happen. I’ve never really been someone to attend church, although I do believe in the Higher Power. I believe that I can talk to that Higher Power or be spiritual without having to go to a center in public. I kind of do that on my own time. I had a lot of anger to begin with as to why are we having to go through this. But ultimately my spiritual beliefs became stronger because I feel like now I have acknowledged that there’s something more than just here on earth. -Mother Not getting something done at work is really irrelevant. She helps me put perspective on life. -Mother I think she has also, because of her life, brought some really amazing people into our lives that we’ve always had but didn’t know we had. We have some really amazing friends now because of that. I think some of our friends that weren’t there for us it showed that maybe they weren’t as good of friends as we thought they were. -Mother A lot of the stuff that would normally bother me, I have a different perspective on it now. I can realize that they are not that important. I notice it a lot when I’m with other people because with me, a lot of things just don’t bother me anymore because they’re not that important. I see other people sometimes getting so upset and bothered by things and it makes me think that they don’t have a clue on what’s important in life. The little things aren’t that important to get upset over. -Father Cameron has inspired me to be a compassionate and forgiving person. A whole new world opens to you when you have a sick child and you realize suddenly that most people, most of the strangers in the subway, in the restaurant, in the movie theater, on the sidewalk, have a story and have personal pain that you can’t see. It was a whole new world, a parallel universe opening up to me. Everybody here has some personal pain. Some of it may be as large as the death of a loved one or the profound life-threatening sickness of their child. That alone is reason enough to give everyone the benefit of the doubt. -Mother She had a positive outlook on life and she never complained. We learned from that. She introduced us to some incredible people. By the fact of her illness we met some wonderful people in the medical profession, in the school she was at, and people who cared for her. That in itself was a gift. These incredible people became important to her and Jackie became important to them. She was also a gift to us in the way that she impacted her sisters. Siblings who are dealing with a child like this have to make amazing adjustments to their own lives. We as a family had to make adjustments. We couldn’t do the things that “normal” families could do. There are things we had to give up and we did because that’s what we had to do and we wouldn’t have it any other way. Just appreciating how our girls responded to that by not complaining and by it just becoming our normal way of life as a family. They’ve accepted that and I hope they have become more caring individuals and more understanding of people who are different. It is really a gift to us to see our girls developing like that. -Mother I’m a little bit different in good and bad ways because of it. In part, I feel scarred. I feel a little sadness all the time that’s there. I feel this knowing that things are going to happen that aren’t the way you want them to be and you don’t have control. There’s also this other sense that maybe for some reason that I can’t see now, that this was meant to happen. -Mother An experience like this, which I don’t wish on anybody in the world and I wish we never went through this, has made us stronger believe it or not. -Mother I Went Back to School to Study Law I have a new goal in life after seeing her go through the hospital and other kids going through what she was going through, and being fortunate that I had insurance and that my child qualified for certain benefits. The way I keep her memory alive, in addition to thinking about her everyday, is by going back to school with the goal of becoming an attorney to help other children. I am attending a pre-law program with a goal of attending Law School. I want to specialize in legal advocacy and health care with a focus on children. -Mother |
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Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated: May 22, 2008 |
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